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Agency in dementia care: systematic review and meta-ethnography

Published online by Cambridge University Press:  06 December 2018

Alessandro Bosco Open the ORCID record for Alessandro Bosco [Opens in a new window] ,
Justine Schneider ,
Donna Maria Coleston-Shields ,
Kaanthan Jawahar ,
Paul Higgs  and
Martin Orrell
Alessandro Bosco*
Affiliation:
Division of Psychiatry and Applied Psychology, School of Medicine, University of Nottingham, Nottingham, UK
Justine Schneider
Affiliation:
School of Sociology and Social Policy, University of Nottingham, Nottingham, UK
Donna Maria Coleston-Shields
Affiliation:
Division of Psychiatry and Applied Psychology, School of Medicine, University of Nottingham, Nottingham, UK
Kaanthan Jawahar
Affiliation:
Division of Psychiatry and Applied Psychology, School of Medicine, University of Nottingham, Nottingham, UK
Paul Higgs
Affiliation:
Division of Psychiatry, Faculty of Brain Sciences, University College London, London, UK
Martin Orrell
Affiliation:
Division of Psychiatry and Applied Psychology, School of Medicine, University of Nottingham, Nottingham, UK
*
Correspondence should be addressed to: Alessandro Bosco, Room A10, Institute of Mental Health, Innovation Park, University of Nottingham, Triumph Road, Nottingham NG7 2TU, UK. Phone: (+44) 7453512212. Email: Alessandro.bosco@nottingham.ac.uk.
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Abstract

Objectives:

Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.

Design:

A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices.

Results:

The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia.

Conclusions:

Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.

Keywords

dementiaagencydecision-makingautonomymetacognition
Type
Review Article
Information
International Psychogeriatrics , Volume 31 , Issue 5: Issue Theme: Well-Being in Dementia , May 2019 , pp. 627 - 642
Copyright
© International Psychogeriatric Association 2018 

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